A Different Normal
Living with a Chronic Condition
Richard C. Senelick, MD is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He is the Medical Director ofHealthSouth RIOSA, The Rehabilitation Institute of San Antonio, and an associate clinical professor in the Department of Neurology at the University of Texas Health Science Center in San Antonio. He has authored several books on stroke, spinal cord injuries, and brain injuries. Dr. Senelick is an expert in the WebMD Stroke Community.
Did you go see the movie Tropic Thunder? Have you rented the movie, There’s Something About Mary? Both movies have scenes that generate laughs at the expense of the disabled. It may seem like “nit picking,” but had a different minority been similarly stereotyped, the outcry would have been much louder. The disabled are a minority who still have a significant barrier to overcome. People rarely understand the simple fact that the disabled have the same desires, dreams and aspirations of able-bodied people.
I work every day with people who have disabilities. I am the medical director of a rehabilitation hospital where I am surrounded by patients with brain injuries, missing limbs, severe deformities and impairments. This is my “normal” environment— one in which I am totally at ease and comfortable. In fact, I have been doing this for so many years that I frequently don’t notice the alarm or discomfort of first time visitors.
By virtue of this familiarity, the assumption is that I have either learned or intuitively know how to interact appropriately with someone with a disability. In my world, it is the rare occasion where someone actually receives criticism or a comment related to something they said or did while interacting with a disabled individual. But, the wars in Iraq and Afghanistan have produced large numbers of “wounded warriors” who have no qualms telling us what they want and how they want to be treated. While caring for these young men and women, it has become apparent that it is time to “test” our own disability awareness and examine whether we act in an appropriate manner.
The difficulty here is that many people are simply not aware that even though their intentions are good, their words can come across as patronizing or insensitive. Below are a couple of common missteps in our interactions with the disabled. See if these ring true and whether you need to reassess your approach.
Greetings: It is second nature to offer your arm and shake the hand of someone you have just met. However, I have seen many people hesitate to shake the hand of a disabled person out of fear that the person is paralyzed or missing a limb. Greetings come in a wide variety these days, from a fist bump to a high five. Extend an arm in greeting and an individual will respond. However, do not invade their personal space by assuming you can rub a shoulder or pat a knee without permission. Even in our increasingly casual society, it is not acceptable to call someone honey, sweetie, baby, sugar or – my least favorite current greeting — “dude.” A few years ago, I was a patient in the hospital and an aide asked me, “How you doin’, dude?” If not for my wife’s restraining “not now” stare, I would have come unglued.
“You are so courageous”: I recently spoke with a young woman who told me, “I always make sure to tell people with disabilities whom I meet how courageous they are.” The definition of courage is, “the mental or moral strength to withstand danger, fear or difficulty.” Yes, a soldier’s courageous act may have resulted in their injury, but now, they may feel afraid, anxious and depressed, and need someone to acknowledge and empathize with these emotions. It is not helpful for us to tell them they are courageous, for that sets an expectation that they must check their emotions at the door and show an “expected” strength at a time when they are barely coping.
“It could have been worse”: Don’t tell a disabled person how “lucky” they are or that it could have been worse. It diminishes the importance of the event or illness. Statements like this come off as judgmental about the impact of the injury on that individual. If you had a stroke that left you with the ability to walk but you still had a paralyzed arm, would you feel lucky?
“I know how you feel”: You should avoid the use of phrases such as, “I know how you feel” or, “I can imagine what it must feel like.” Unless you have the same or similar disability, you do not know how they feel. It is better to say, “I have never had to sit in your chair nor walk in your shoes. I hope that I never have to, but I will be here to help you get through this difficult time.” Empathy without sympathy. Assistance without patronization.
We recently watched moving memorials for those who died on September 11, 2001. Ten years later we have tens of thousands of soldiers who have unfortunately joined the 5.6 million Americans who have to live in wheelchairs. Will we honor their “new normal” with appropriate social interactions and greetings? You may say, “Of course, I will.” But I challenge you to go a step further and become a disability etiquette educator. Spread awareness among your co-workers, your associates and your family. And, from time to time, it never hurts to look in the mirror.
